our house CLAIRE HOUSE SPRING MAGAZINE 2020
playing for the memories
At Claire House children like Niamh can play, have fun and make memories
WELCOME TO OUR HOUSE Hi everyone! Our names are Niamh and Evelyn and we’d like to welcome you to the Spring 2020 edition of Our House Magazine, from Claire House Children’s Hospice. This issue, it’s me on the cover (Niamh), with Play Specialist, Lawren. We recently spent time at Claire House with our mum and dad and baby brother Max. The Claire House Team helped to care for Max when he was very poorly. You can read all about everything we got up to in the Art Room and the time we spent with Lawren in this edition. There’s been lots going on at Claire House over the past few months and that’s all thanks to donations from people like you. Claire House couldn’t support families like ours without your help, so we’d like to say a big thank you. We hope you’ll enjoy reading this issue of Our House and hearing all about what’s been happening at Claire House. Love, Niamh and Evelyn
Thank you To everyone who has contributed to this edition of Our House. In particular, the Claire House families featured and the photographers and volunteers who gave up their time and leant us their skills.
Editor: Jessica Arnell jessica.arnell@clairehouse.org.uk Contributors: Laura Kelly, Tina Miles, Hannah Shannon Photography: Fotopia, National Lottery 25th Birthday Design: coppermedia.co.uk
Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883 www.clairehouse.org.uk Registered Charity Number 1004058
CONTENTS
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PLAYING FOR THE MEMORIES
Learn how Claire House Play Specialist, Lawren, helps families to spend time together, making memories.
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“BEING A COUNSELLOR AT CLAIRE HOUSE IS A PRIVILEGE.” Meet Counsellor, Rachael, who supports families at the most difficult time of their lives.
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CLAIRE HOUSE HELPED US SAY GOODBYE TO OUR BOY TWICE Mum Nicki was heartbroken when her son Shea developed a rare brain condition. Read how the support Claire House offered before and after Shea passed, helped her to cope.
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“WE HAD SIX MONTHS WITH LENNON AND THEY WERE THE BEST SIX MONTHS OF OUR LIVES.” Chris and Jessica Smout found out their baby boy had a life threatening condition before he was born. Read how Claire House were there for the family every step of the way.
PAINTING PRETTY PICTURES
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OUR HOUSE NEWS
Take a look at the Claire House Art Room and find out about everything that goes on in there.
Catch up with the latest news from your local children’s hospice.
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Playing for the memories 4
The Claire House Play Team don’t just help children and young people to have fun – they help families to spend time together, making memories. 5
Claire House Play Specialists, like Lawren, provide the opportunity for children and young people to play and have fun, no matter what disability they have or how poorly they are. “When a child is close to passing away, it’s about making sure their last moments are special and making memories for the family, and if they have something they would like to do, we help to make that happen. We always try to make sure they get some very special family time together before their child passes away,” explains Lawren Harris, Play Specialist. The team don’t just support the child; they support the whole family. Families like Niamh and Evelyn’s. Four-year-old Niamh and three-year-old Evelyn came to stay at the hospice with their mum Sarah, dad Jason and their baby brother Max.
Max was born with a condition called Smith Lemli-Opitz Syndrome. He was very poorly and when Max was three weeks old the family came to stay at the hospice for end of life care. “A big part of my role is to support siblings, so when they come and stay in the hospice and their brother or sister is having end of life care, we do a lot of work with them to take the pressure off the parents and to distract the siblings. “We use techniques to get the children to open up and describe how they are feeling, while playing,” explains Lawren. Niamh and Evelyn and their family stayed at Claire House for four weeks.
“Having the Play Team there meant we got to make memories as a family with Max.” “The girls got to take part in so many activities whilst we were at the hospice, they were always in the Art Room, singing and painting pictures,” said mum Sarah. “Lawren and the team included them in everything.
Niamh and Play Specialist Lawren
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“They got involved in baking and pamper sessions and were there for the pyjama party when Sophie Ellis-Bextor visited with the National Lottery.
Evelyn and Sophie Ellis-Bextor at the National Lottery’s 25th Birthday pyjama party
“And on the days when Max was poorly and we didn’t want to leave the hospice, the girls could go off and play,” shares Sarah.
“It was nice to know that the girls were there with us, but that they could go off and have fun,” explains Sarah.
Lawren and the team help families to make memories together.
“Building relationships is a really important part of what we do,” explains Lawren. “When parents are saying goodbye to their child, siblings can just wander in to the Art Room. The room is always open and there is always one of us here. They can just come and play and know that they’ve got that support.”
“Having the Play Team there meant we got to make memories as a family with Max, like at the Creepy Crawly Show. Evelyn put a huge snake around her neck and we just got to enjoy some time together,” says Sarah. Max passed away in October 2019, when he was just seven weeks old.
“Being able to spend time with the Play Team and go to the Art Room made being at the hospice brighter for the girls,” says Sarah.
“The morning after Max passed away the girls were off pumpkin picking, it just gave me and Jason time to grieve, to spend time with Max and care for him.
“And me and Jason got to spend time with Max without having to worry. It took the pressure off us and made such a difficult time more positive.”
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“Being a Counsellor at Claire House is a privilege.” Meet Rachael Hogg, a Counsellor at Claire House who supports families at the most difficult time of their lives. “I feel honoured to be a Counsellor at Claire House. Being alongside our families feels a privilege and a really special thing to be able to do.” Rachael works as part of our Family Support team. Counselling at Claire House means supporting children and families during difficult times. The team provide a safe, nonjudgemental space for people to come and talk in a warm, relaxed environment. Rachael offers support to mums like Mandy Reeves, whose 17-year-old son Kieran passed away suddenly after he was involved in a collision. “After losing Kieran, Rachael gave me coping mechanisms to help me carry on. “I don’t think without her continued support, that I would still be here. “Losing Kieran has been so difficult and it hurts so bad, but the care Claire House offer is continuous. It’s not just about the child, it’s about the family afterwards as well,” says Mandy. Last year the Family Support team supported 178 children, parents, carers and other family members who had suffered a bereavement.
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“The main part of my job is one to one counselling sessions. However within our team we also offer therapeutic groups for mums, dads and grandparents as well as social events for siblings and families,” explains Rachael. “One to one counselling offers people a safe space to come and be able to talk about things that they might not be able to say to other family members or friends. “The groups help parents, grandparents and siblings to realise that they are not alone. For them being in a room full of others who understand how difficult life is, is really important, it can help them to reconnect and feel less isolated,” explains Rachael. The team can support people wherever they need it, whether that be at the Wirral hospice, Liverpool site, in their homes or in schools. “Counselling at Claire House is based on building relationships and supporting families at the most difficult times, whether that be post bereavement, pre bereavement or just helping them to deal with everyday life when caring for a seriously ill child,” says Rachael.
Claire House helped us say goodbye to our boy, twice Mum Nicki was heartbroken when her son Shea developed a rare brain condition, but the support Claire House offered before and after he passed was priceless. 10
Mum Nicki and Shea
We were introduced to Claire House in January 2011 – just four months after Shea was diagnosed with Adrenoleukodystrophy (ALD). At first, we couldn’t get our heads around the fact we would be taking him to a hospice. But it couldn’t have been more different from the dark, solemn place we were expecting. Rather than lying in bed, the children were up, laughing and having fun; and it wasn’t long before Shea was in the middle of it all. The team were amazing and during the next seven years helped him to take part in crafts, music therapy, swimming and even to score goals through computer technology. Maebh, Shea and Malachy (left to right)
Watching our boisterous six-year-old jumping up and down on a hospital bed, we couldn’t believe what we were hearing as the consultant explained he had developed a rare brain condition. A CT scan revealed two abnormalities in our son Shea’s brain and, after a MRI confirmed a diagnosis, doctors were sympathetic but firm; nothing could be done. For my husband Steve and I, the news was like being hit by a truck. Almost overnight we had seen our lively little boy struggle to hang up his coat and write his name. Even holding a golf club became too difficult for him. Bit by bit we were watching our cheeky, fun-loving child disappear, and it was absolutely heart-breaking. We didn’t know how long he had left and, within months, Shea became ill very quickly. In a matter of days, he was unable to see, speak, feed himself or move. Our world fell apart.
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Their support meant that I could just be Shea’s mum rather than his carer, and cuddle or play with him while someone else organised medication or worked on his chest physio. It made a horrific time a bit easier, and looking back, I can’t imagine how awful the situation would have been without Claire House. There would have been no respite, nowhere that our twins Malachy and Maebh could have played that would have been near their brother, and nowhere we could have gone as a family to spend time together, while someone supported Shea with his medical needs. From Shea’s diagnosis at six, Claire House has been there for us every step of the way. They were a lifeline when Shea was here, but I’ll never be able to thank them enough for their support after he passed, age 13, at home in Liverpool in October 2017. The team looked after Shea, keeping him cool at home, so we got to spend 10 more days with him until his funeral.
“The memories they helped us to create will be treasured forever.” The tangible memories they helped us to create during that time will be treasured forever; his fingerprints on canvases, special necklaces, with fingerprint pendants – all priceless keepsakes of our precious son. Claire House also helped with things like the order of service. It’s a world you don’t know exists until you are thrown into it. Your family and friends can’t comprehend what it’s like to arrange your son’s funeral even though they try and do their utmost to help, but everyone at Claire House understands – it’s like a family. They’ve continued to care for us, offering counselling and inviting the twins on sibling events, and that’s so special.
This year, to mark what would have been Shea’s 16th, I’m doing 16 challenges to raise money to pay for other children’s care. It seems the perfect way to celebrate his birthday and help other families going through similar experiences to ours. We grieved twice for Shea – first for the fun-loving six-year-old taken from us by his condition and then for the beautiful boy we mourned when he passed. And while there’s no manual to tell you what you should and shouldn’t do when you lose a child, knowing that Claire House was and still is there to help us through it, means that no matter how hard the process is, we know we’re not alone.
Maebh, Malachy, Dad Steve, Shea and Mum Nicki (left to right) with Boogie Storm
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“We had six months with Lennon and they were the best six months of our lives.” When Chris and Jessica Smout found out their baby boy was seriously ill, Claire House were there for the family every step of the way. Here they share their son Lennon’s story. 15
“At 28 weeks pregnant, we found out our little boy, Lennon, was going to have life-threatening issues. That is when we met Claire House,” shares mum Jessica. “We knew through the pregnancy that Lennon had Congenital Diaphragmatic Hernia (CDH) and it was always going to be hard for us,” says dad Chris. “My pregnancy was so far from anybody else’s ‘normal pregnancy’. We come from a large family and there were six of us pregnant at the same time,” says Jessica. “But my experience of pregnancy wasn’t the same as any of theirs. I never had anyone to talk to or that kind of support - Claire House did that. They cared for me and supported me throughout my pregnancy.” Mum Jessica, Dad Chris and Lennon
“With the CDH, we were not sure what it was going to be like when Lennon was born,” says Chris. “He went straight into intensive care. Within two, three hours we had Claire House with us, giving us as much support as we needed. “We had 24 hours at Liverpool Women’s and then we moved to Alder Hey. Lesley from the hospice came to support us from there on, every day if we wanted it. “When he was six days old, Lennon had major surgery, which was unbearable for us as parents, but he flew through it, showing how strong he was. “To have Claire House there, by our sides and to guide us through that was amazing.
Mum Jessica having a cuddle with Lennon
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“With six months in hospital, there were ups and downs, but Claire House were there to support us, helping us to make memories.”
“I just needed someone to hold my hand and that’s exactly what Claire House did.” “Lennon was my first child, I didn’t really know what I was doing, what was for the best. And they gave me that confidence,” explains Jessica.
“They planned everything and looking back, it is everything, all of our memories. At the saddest of times saying goodbye to your child, it doesn’t get any better than that.
“Come December, when they told us the bad news about Lennon, that he wasn’t going to survive, Claire House were there,” says Chris.
“Lennon left this world, surrounded by people who love him.”
“We decided to go to Claire House,” says Jessica. “For a family who had spent six months in the ICU unit, with all of the bleeps and the buzzers, that was never where we wanted to spend our final moments with our child and Claire House made it possible for us. “We had a full day at Claire House. “We had him christened and a service for a second time at the hospice, after he was first christened when he was born. It was beautiful, just how you imagine a little boy’s christening to be. “After Lennon’s christening, we had a walk out in the hospice’s beautiful gardens, and Lennon experienced, for me, some kind of life. “I had always wanted to take Lennon outside; he had never been outside. He had only ever been on an ICU unit. “Without Claire House that would have never materialised,” says Jessica.
“We had six months with Lennon and they were the best six months of our lives,” says Chris. “He was everything for us.” “In the very first weeks, I just needed someone to hold my hand and that’s exactly what Claire House did,” shares Jessica. “And then as the journey went on and time passed, we realised there was more support from Claire House that we could benefit from. They made those initial steps very easy. “They put us in touch with other parents who have had a similar journey to ours, that we can relate to, that we can talk to and they understand. “There’s something that suits everybody. I have my own counselling sessions; my husband joins in with the dads’ football. “Claire House is a sanctuary to me. I am in the place where my child passed, but I am also in the place that loved my child dearly.”
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Painting pretty pictures! There is always lots of fun and laughter in the Claire House Art Room, as well as paint, glitter and glue. Like lots of children and their families, Isaac and Imogen love spending time there with their sister Isabelle who is supported by the hospice. Every play session is adapted to the child or young person’s capabilities, ensuring they get the opportunity to engage with every activity taking place. These include sensory stories, individualised, adapted arts and crafts, eye gaze technology, messy play and baking, to name a few. Sensory experiences like these are really important for the children and young people Claire House support. Smell, touch, bright colours and sounds all help the children to express themselves, develop their senses and most importantly have fun!
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OUR HOUSE news Trustee of the hospice, I’m not surprised we received this wonderful news, as it just confirms what I see going on day to day.”
WE ARE OUTSTANDING Claire House is delighted to have been rated as ‘Outstanding’ by the Care Quality Commission (CQC). The regulator of health and social services in England visited last October. Hayley Smallman, whose daughter Holly uses the hospice, said: “As a parent and
Outstanding is the highest rating and is achieved by only a small percentage of healthcare organisations. Although Claire House achieved Outstanding in 2015, to achieve the rating again is a high achievement, given that the organisation is now inspected in the same way as other healthcare organisations, such as hospitals. Janet Sutherland-Oakes, our Director of Clinical Services, said: “This was a huge team effort and I would like to say thank you to all the staff, volunteers and supporters who have worked so hard over the last few years to make this possible.”
GAMING THE DAY AWAY What do you get if you have 16 lads, some games and Claire House? A 24-hour gamea-thon! That’s what happened on 16th November last year. Several of the lads who come to Claire House wanted to do their bit and give something back to the charity. On their own initiative, they decided to hold a 24-hour game-a-thon in the hospice. Supported by the care team, 16 lads took on the challenge, which included a FIFA and Mario Kart Tournament and traditional board game playing. Jordan, who took part, said: “It was the best time I have had at Claire House, because we all got to bring our beds into
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the Teen Lounge and carry on playing games through the night.” The generosity of those who donated meant the lads smashed their initial target of £10 an hour. Instead of £240, they managed to raise £1,400! This could help pay for nearly 50 sessions of Play Therapy.
GIVING BACK
SPLASHING INTO ACTION Jake, seven, started his fundraising journey for Claire House last summer when he held a bake sale and raised £16. When dropping his fundraising money off, he overheard someone use the word ‘terminal’. After Jake found out what this meant, he leapt into action. “I wanted to fundraise because I want to help other people in need and I could use my ability of swimming for it,” explained Jake. Within 24 hours, Jake had planned a swim-a-thon.
32-year-old Andrew, who has Spinal Muscular Atrophy, decided he would like to give back to the charity that supported him. Andrew, who is wheelchair dependent, first came to Claire House back in April 2000 and was supported by the hospice up until October 2011. Andrew loved the time he spent at Claire House and wanted to do something to give back. Now, for a few hours every week, Andrew helps sort through stock at the charity’s Retail Donation Centre in Wallasey. “My favourite thing to do is sort through the books and CDs, but I like helping with whatever I can,” said Andrew. “I know what a great charity Claire House is and I just want to do something to help.” To find out more about our volunteer opportunities visit clairehouse.org.uk
On the day, Jake, who had only been swimming for just a year, managed to swim 20 lengths. The kind support of his swim-a-thon has helped to take Jake’s fundraising total to £461. But he isn’t stopping there…
TRUCKING IT FOR CHARITY B&M Waste Services continue their support for Claire House, with their annual Charity Truck Pull, raising money for the hospice and seven other charities. The competition is simple, each of the eight teams must pull a 14.7 tonne truck over a 20m course in a tug of war style challenge. The fastest team wins the most for their charity!
The fun team-building activity helped to raise money for each of the charities, with £500 being donated to Claire House. Jayne Kennedy from B&M Waste Services said: “We’re already looking forward to doing it all again in 2020 and urge other businesses to look at ways they too can fundraise, volunteer and support Claire House, as we are proud to say we have done for a number of years.”
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